Tag Archives: results

Mattie fast asleep on my kneee, in the middle of Emma's staff Christmas party.

The Pre Christmas EEG Results

The problem with Hypsarrhythmia, the tell tale electrical activity present in an EEG which signifies Infantile Spasms, and can cause brain damage is that it’s transient; it comes and goes. It’s most frequent during tired periods before or after sleep, but it could happen at any time. The spasms we associate with the condition are just the physical side effect of what is going on in Mattie’s brain, they can be subtle and hard to detect. For months now we had been treating Mattie’s condition with the only indication of success being the lack of a spasm. Getting some hard data – a physical measurement via the EEG that the drugs are working is what both Emma and I were waiting for. If clear it would give us confidence that the electrical activity had returned to normal, and we’d not just missed another spasm.

In the two weeks following the EEG we’d called the hospital twice to try to get some feedback on what it showed. When we didn’t hear anything we assumed that, since Mattie was doing so well, “no news was good news”.

It felt like it took forever and a day, but eventually Emma got the call from the hospital and relayed the news to me. The EEG did not show any signs of Hypsarrhythmia! Success! This was fantastic news! But there was a “slow background”, which we were told was common in babies with Infantile Spasms.

I think it’s fair to say that between Emma and I, Emma is the more optimistic; I immediately focused on the slow background news, and couldn’t relax until I found out what it actually means. The truth is overall this was good news, but I just had a nagging feeling, an itch which needed to be scratched, what did this slow background mean?

The EEG’s Slow Background

After talking to David if there is one thing that stuck with me, was not to take things at face value. So I started a mini-research project into the EEG’s “slow background”. What did this really mean?

An initial search turned up an article which suggested that the slow background was a result of a brain injury, or other physical issue – something we’ve been told Mattie doesn’t have:

Following a seizure (ie, during the postictal period) the EEG background may be slow. However, interictal background EEG frequencies that are slower than normal for age usually suggest a symptomatic epilepsy (ie, epilepsy secondary to brain insult). Normal background suggests primary epilepsy (ie, idiopathic or possibly genetic epilepsy). Thus, EEG background offers important prognostic[Christine1] and classification information.

(EEG in Common Epilepsy Syndromes / EEG background frequencies and epileptiform discharges)

So how could this be? Was there something more significantly wrong? We were about to call the hospital back when Emma read an article from another parent on the Infantile Spasms Facebook group, it was asking roughly the same question. One of the answers offered was that a doctor has informed one of the parents that slow background can be a side effect of the medication. I’d not heard of this before so checked it out.

The only EEG modifications induced by GVG monotherapy were a more pronounced slowing of the background activity at rest with EC [Eyes Closed] and a reduced responsiveness to BR [Blocking Reaction].

(EEG changes induced by vigabatrin monotherapy in focal epilepsy.)

This research paper suggested that the medication Mattie is on could produce a slowing of some of the background waves. What did this mean in the real world? – According to the same article it could induce a mild “sedative” action on attentive tasks rather than on cognitive function. I imagine that while the folks in the study could still complete a mental task, it look them a little longer than expected to get it done. – Which is a good approximation to what the doctors had told us to expect.

Mattie Today

Mattie is doing well. In the run up to Christmas he started suffering from normal everyday baby problems, conjunctivitis, and a cold. Emma and I would take this rather than more IS. He’s now 9 months old and has just about got the sitting up straight bit down… Well for good 10 minutes before he gives up. Mentally we think his doing really well; he’s turned into an octopus, hands everywhere, grabbing everything.

Emma’s employer organises a children’s Christmas party in their staff canteen. We took Mattie and Ben down, Mattie fell in love with the balloon sword he had been given, and with a little help from daddy enjoyed whacking his older brother and mother with it. Enjoyed it so much we couldn’t get the balloon of him until, in the middle of the party he fell fast asleep, normally, without any spasms.

We know this is something we’ll need to keep an eye on, but for now at least, we’ve got just what we wanted for Christmas.

Thank you all so much, for your kind words and support, it has made the world of a difference, Merry Christmas everyone – I hope you all have a fantastic Christmas break.

Mattie at the Disney Store for the first time

Mattie’s Check Up Results

Tuesday 5th November

I’d just sat down at the meeting, the first speaker had stood and was about to start talking when my phone buzzed.

I’m away from home, in Israel attending a meeting for work while Emma and Mattie are back in hospital in Dublin for Mattie’s check up. Waiting for news, when the phone buzzed I grabbed it eagerly.

The Check Up Results are In

Emma had just arrived at hospital and had texted to give me an update:

"His genetic screening came back clear - it's official :)"

This was great news. Infantile spasms can be caused by a genetic disorder. The hospital had taken a blood sample from Mattie when he was first admitted to check for this. It takes a long time to run the relevant tests. We had only just got the results back – and it was great news! It means that Mattie is officially categorised as “idiopathic”; subset of all infantile spasm suffers who happen to have a great prognosis.

30 minutes later, after Emma and Mattie had seen the Doctor, the news was even better:

"Our boy is amazing! :) they are delighted with him :) aren't concerned about the eye flutters only said if we see it in clusters or out of waking that we should be worried :) see them in 3 months and an EEG in the middle :)"

It speaks for itself really! We are delighted. He’s not out of the woods, he’s still on his medication and we have to watch him. But it does mean that the medication seems to be working! – we’ve still got to watch him just in case, but it does give us so much reassurance that his development is ok.

… Now I’m pretty sure there is a meeting going on ….

The Disney Expression

After the appointment at the hospital Emma took Mattie to the Disney store in Dublin for the very first time, his expression is brilliant:

Mattie at the Disney Store for the first time

Mattie at the Disney Store for the first time